A practical guide to disseminate

EULAR recommendations to patients

August 2015

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Content Preface 3

Developing EULAR recommendations 4

Principles of disseminating EULAR recommendations 4

Developing and using lay summaries 5

First step: adaptation 6

o Developing an English lay version o Developing national language versions

Second step: dissemination 9

Appendix

Figure 1: flow chart procedure for dissemination 12

Checklists 1-6 13

Literature 22

Acknowledgement 23

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Preface

Patients are becoming more actively involved in the management of their own disease and the healthcare decisions that have to be made. This is called shared decision making: decisions about potential treatments are made on the basis of information given by the health professional and on the preferences of the patient. To make a well-informed decision, it is necessary for the patient to be provided with up-to-date information about treatment options. This includes the benefits and risks of taking or rejecting a particular treatment. It is because of this increasing need for reliable and easy to access information that EULAR develops disease management recommendations. EULAR, and in particular the EULAR Standing Committee of PARE (People with Arthritis/Rheumatism in Europe), considers it important that these recommendations reach patients as well as health professionals. EULAR has therefore made the dissemination of recommendations a priority for the coming years. Patients should be aware of the EULAR recommendations and where to find them. However, the traditional, scientific wording of the recommendations is often difficult for lay people to understand. It is important, therefore, to adapt the recommendations to the language of the patient. Moreover, it is sometimes necessary to adjust recommendations to the context of a particular country. EULAR wants to promote this process by providing English lay versions. EULAR furthermore encourages its member organisations to translate the lay versions into other languages and to disseminate these versions to patients in their own country. Also in countries that have developed national guidelines or recommendations, patient organisations should develop lay summaries and disseminate these to patients. High quality and up-to-date patient versions are needed to ensure that all people with rheumatic and musculoskeletal diseases (RMDs) in Europe are aware of the existing recommendations, and can understand them. Because patient organisations represent the users of health care, they are key players in this dissemination process. For this reason the EULAR Standing Committee of PARE initiated the development of this practical guide on the dissemination of recommendations to patients. The guide is in the first place meant for national patient organisations. Because we expect that in many cases patient organisations and health professionals will work together, we think the guide will also be useful for health professionals with an interest in promoting patient education. Marios Kouloumas Gerd Rüdiger Burmester EULAR Vice-President representing PARE EULAR President

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Developing EULAR recommendations Over the years the European League Against Rheumatism (EULAR) has developed many recommendations for disease management. These recommendations are primarily developed and published to inform practicing health professionals and to improve their daily treatment routines. EULAR recommendations are developed following a standardized procedure which is laid down in the so-called EULAR Standardized Operating Procedures for the Elaboration, Evaluation, Dissemination and Implementation of Recommendations, originally published in 2004. Patient participation in the establishment of recommendations has been a key notion for EULAR for many years ensuring a broad view on the relevance of the recommendations and increasing quality, validity and usability. In furtherance of this principle, in 2011 EULAR formulated eight recommendations for the inclusion of patient representatives in scientific projects. For guidance, EULAR has developed various reference documents on patient inclusion, all available from the EULAR website. In view of implementing recommendations for the management or treatment of specific rheumatic and musculoskeletal diseases, EULAR recognises that developing recommendations is only the first step and that another priority must be set on their dissemination to all relevant parties. This priority has gained importance in recent years and is reflected in the revised EULAR Standardised Operating Procedures that were published in 2014. In this new version, the role of patients in recommendation project task forces is again confirmed and re-emphasised, and the importance of early planning of the dissemination and implementation process is underlined. Principles of disseminating EULAR recommendations This Guide presents the key EULAR concepts for managing the dissemination and implementation process and provides guidance and tools for making it happen. Dissemination refers to the process of raising awareness about the recommendations; it gives insight in the existence of recommendations and where to find them. Implementation is the process of promoting the application of recommendations; this leads to more (structural) use of the recommendations or guidelines in clinical practice. A description of the process and responsibilities is provided in a flow chart (figure 1). EULAR recognizes that dissemination can only be successful in close collaboration with all stakeholders. EULAR therefore acknowledges the important role of national patient organisations and health professionals in initiating the translation and dissemination of the EULAR recommendations to health professionals and patients. Collaboration with health professionals is necessary because they are in close contact with patients and have extended insights into the needs and concerns of patients. By health professionals we mean all people working with people with a rheumatic or musculoskeletal disease. This includes rheumatologists, nurses, orthopaedics, physiotherapists, occupational therapists, psychologists, physicians and general practitioners.

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Dissemination of EULAR recommendations should be planned from the beginning and be included at the start of the development or updating of the EULAR recommendations. A dissemination plan will consider how the recommendations can be spread to different audiences using different tools and strategies. The plan includes identifying target audiences, their information needs and the strategies for dissemination of the EULAR recommendations, as well as suggestions for evaluating the dissemination process. The box “EULAR views on dissemination” summarizes the key ideas and measures for effective dissemination that EULAR is applying.

Developing and using lay summaries The key approach to disseminating EULAR recommendations to patients is the preparation of lay summaries of the original scientific text. Primary target group for patient versions are the individual persons with a rheumatic or musculoskeletal disease. A lay version is important to inform patients about what they may expect when they are receiving rheumatology care as described in the EULAR recommendations.

EULAR views on dissemination In 2014, EULAR updated its Standardised Operating Procedures for EULAR-endorsed recommendations. The following bullet points are taken from the official EULAR document and emphasize the importance of dissemination: • Implementation starts with knowledge about the recommendations. Therefore,

dissemination is the crucial first step. • A strategy for dissemination should be part of the original proposal. • The minimum dissemination that is required is the submission of an abstract to the

EULAR annual Congress and the submission of a manuscript to the Annals of Rheumatic Diseases, the EULAR journal, for consideration of publication.

• Although the content of the recommendations will not vary, the presentation, dissemination and implementation may need to be adjusted for the various target audiences (for instance lay versions of recommendations for patients).

• For dissemination purposes it is important to present the recommendations in an easy to understand way.

• A special consideration is the development of a lay version of the recommendations for patients. Ideally, this would be part of the original project, but frequently this can only be completed as a separate project afterwards with involvement of a larger group of patients.

• Another dissemination option is to send the recommendations to a high number of the intended end users, for example, rheumatologists in various countries in case of management recommendations. The rheumatologists can be asked about their agreement with each recommendation in a similar way as described for the task force members. In addition, they can be asked to indicate whether the specific recommendation will change their practice, and if it will not change their practice, is this because they disagree or because they already apply this in clinical practice. Finally, expected or actual barriers to the implementation can be listed. This will provide essential information to develop an implementation project.

• Other ways of dissemination are presentation by key opinion leaders, the inclusion in national recommendations, and continuing education programmes.

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Rheumatologists, health professionals, general practitioners and national and international patient organisations may be included as secondary target audiences for the lay versions. The goal of dissemination to these different targets group may vary. First step: adaptation 1 - An English lay version should be developed for all EULAR recommendations All recommendations should be adapted and translated into an English lay version. There are various ways of producing English lay versions. The Annals of the Rheumatic Diseases started in 2014 to produce lay summaries of scientific papers. These summaries are written by a medical writer and reviewed by members of the PARE network of Patient Research Partners. Checklist 5 provides some examples of translations into lay language. Ideally, this lay version is published together with the original manuscript. In 2015 EULAR decided to follow the same procedure for each EULAR recommendation. EULAR has developed specific Standard Operating Procedures for this process. In the past, a few English lay summaries have been developed at stand-alone events. An effort of the Belgium Reumanet to translate and develop lay versions in Dutch is described in the box on page 8 for illustration. Checklist 2 contains an outline of basic information that is considered relevant for patients. The English lay version should fulfil some general principles The English lay version should meet the demands and needs of patients. It should be simple, up-to-date, understandable and readable for a wide range of people. Preferably, therefore, it should be developed or checked on readability by non-native English speakers from different countries. Providing a high quality lay version of recommendations might be time consuming and requires expertise. At the end, the (medical) information should be checked for accuracy and consistency with the original recommendations. A good patient version takes the general principles for a clear text into account: 1) Be as short as possible. Avoid unnecessary

information. 2) Use familiar/layman wording instead of jargon. 3) Explain medical terms if these cannot be avoided. 4) Use words of one or two syllables. 5) Present clear and consistent (unambiguous)

information. 6) Use active voice in the present tense, for example,

‘Brush your teeth after every meal’ instead of ‘Your teeth should be brushed after every meal’.

7) Use short sentences of 15 words or less. 8) Use short paragraphs of ten lines or less. 9) Be aware that the language of patients is not similar to the language spoken by

professionals.

“I keep constantly the target audience in mind. I always try to write a text that a person of 14 or 15 years old can understand. I am conscious not to use any jargon and to keep sentences as short as possible.” Nele Caeyers

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Electronic testing of readability These principles should not be handled as strict, mandatory guidelines, but as a rule of thumb. To improve the quality of lay texts, software has been developed to check texts on readability using for instance the criteria of Flesch Reading Ease, the Evaluative Linguistic Framework or other formulas. This software analyses the characteristics of a text such as the average length of a sentence and the average number of syllables per word. The result is an objective assessment of the readability of the text. 2 - For non-English speaking countries the English lay version should be translated into the national language and adapted to the country-specific situation The English lay version of recommendations must be translated into the national language of each country. This is important to make the recommendations accessible for a wider audience. The translation of the recommendations must stay close to the original English lay version. This will avoid differences between the lay versions in different countries and prevent new recommendations being developed that are not based on evidence or expert consensus. If possible, the translation should be done by a professional medical writer, following the principle of “forward and backward translation”. This means that the lay version is first translated into the target language, then the translated version is again translated into English; the second English version is then compared with the first version. The differences need to be discussed (see checklist 4). Collaboration with the national society for rheumatologists may increase the chance to obtain funding. The lay version should then be checked by patients for relevance and readability.

Country specific The national versions of the recommendations have to be country specific. This means that there should be information about the use of the recommendations for that specific country. This information can be given in a separate text box. It has to explain which adaptations have been made to make the recommendations applicable in the national context. EULAR name and logo All English lay summaries, commissioned by EULAR and approved by the Task Force leader, carry the EULAR name and logo. Translated and country specific lay versions based on the EULAR recommendations cannot have the EULAR logo. However, if the translated version is approved by the EULAR scientific society of that country, and if it has a web-link to the original and English lay version, it may carry the title, for instance: “German translation of the EULAR management recommendations for …. etc.” Checklists Checklist 3 describes the process of translating the English lay version into national lay versions. It also explains how to adapt the English lay version into a suitable version for the country-specific situation. This checklist gives practical pointers about the use of logos and the quality-check of the translation. Checklist 4 gives more information about which steps should be taken to translate the English version into other languages. Both checklists can be followed with as well as without the involvement of a medical writer.

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Reumanet translates EULAR recommendations

The Belgium patient organisation Reumanet took the initiative to translate existing English lay versions into Dutch. Where there was no English version, a national Dutch lay version was developed on the basis of the original EULAR recommendations. The steps of both scenarios are described separately below. If a EULAR lay version exists... The first Dutch lay version was translated from the existing English lay version of the ‘EULAR recommendation for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update’. According to Nele Caeyers, responsible for developing the lay versions, the translation into Dutch was not difficult and required hardly any adaptations. The amount of time to make the first translation took not more than 1,5 day. The translated version was sent to members of the Belgium network of patient research partners. They checked the translation for readability and content. Then something interesting happened. One of the patient research partners noticed that the recommendations were slightly different from what recently had been concluded in a national study. As a consequence the translated lay version was forwarded to the involved rheumatologist to check the accuracy of the content of this lay version. The rheumatologist concluded that the recommendations were much in line with his findings, except for one aspect. This aspect was added to the national lay version with an asterisk and a footnote. This made the national lay version more specific, as the particular findings were also included. It was then checked with patient research partners whether this addition of information was understandable and clear. Once this was agreed upon, the final national lay version was published on the Reumanet website (Reumanet.be) and in several magazines of Reumanet member organizations. Patients and professionals were very enthusiastic about this national lay version. If no EULAR lay version exists... The development of national lay versions where there are no English versions is much more difficult and more time consuming. In this case the first step should be reading the scientific manuscript and summarizing and translating the parts that are relevant for patients. Reumanet started this process by again involving the members of the Belgium network of patient research partners. It is the experience of Reumanet that this scenario takes much more time, up to a couple of weeks. It also requires more energy and resources. For example, more attention should be given to the collaboration with stakeholders, preferably from an early stage to align the different expectations and possibilities.

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Second step: dissemination

1 - The original version, the English lay version and the country specific version of the EULAR recommendations should be easily accessible for patients It is important that patients have access to all versions of the EULAR recommendations. All available versions of the EULAR recommendations can be accessed through the EULAR website: www.eular.org. Also, when sent to the EULAR secretariat, the translated versions that have been approved by the EULAR scientific society of that country will be made available through the EULAR website. The patient organisations have to make the country specific version easily accessible on their websites and include a link to the original and the English lay version. Beside the use of the websites, other ways of spreading recommendations are encouraged (see below and checklist 6).

2 - For dissemination of the national lay versions to patients a combination of traditional as well as innovative tools should be considered

To disseminate the EULAR recommendations successfully to patients, patient organisations and health professionals, a variety of strategies can be used (see checklist 1 and 6). More traditional methods are dissemination via internet, presentations, self-

ARD lay summaries for patients and non-clinicians In 2014 the British Medical Journal (BMJ) started to develop lay versions of some of the EULAR recommendations and other scientific publications that might be of special interest to patients. The lay versions are written by a professional medical writer. The BMJ collaborates with EULAR in the review of the lay versions, and improving the layout and accessibility. This task has been undertaken by the members of the PARE network of patient research partners. They regularly read draft lay versions and send their feedback to the BMJ. Their comments have already resulted in substantial adaptations in the layout of the lay versions and in improving accessibility by open access* through the BMJ and EULAR websites. Because not all original manuscripts are open access, there are technical and legal obstacles to making the accompanying lay versions open access. We hope the obstacles will be solved in the near future to give patient organisations and all individual people with RMDs the opportunity to download the lay versions for free.

The lay versions can be accessed through: http://ard.bmj.com/collections/ard_lay_summaries

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management courses or leaflets. Innovative ways to spread recommendations might, for example, use social media or videos. Patients and patient organisations could explain their publicity campaigns. Their experiences might be used as good/bad practice examples for future campaigns to disseminate recommendations. There are frequent events where groups of patients come together. These events are ideal to present the content of the recommendations and to explain why it is important for patients to know about them. These events can be symposia, patient meetings, self-management programmes or the general assembly of an organisation. In some countries, ambassadors play a key role in the dissemination of recommendations. This is described in the best practice below. Using meetings that are already organized is an efficient and effective strategy to reach a group of patients at the same time. For this reason it is sometimes less costly and less time-consuming to wait until an existing meeting rather than organizing a separate event. The use of combined strategies and repetition of key messages are the most effective. Other suggestions for dissemination strategies are given in checklist 6.

Swiss ambassadors raise awareness The use of ambassadors for sensitisation has become more common in European countries. A project of the Swiss Rheumaliga used ambassadors to raise awareness of rheumatic diseases and preventative measures. Brief, clear messages were formulated to target people affected by rheumatic diseases, their relatives, health professionals and the wider public. Although the aim of this campaign was to create broader awareness and sensitisation and prevention, different components of this strategy are relevant for the dissemination of recommendations, particularly the use of ambassadors. This campaign showed the value of using existing public events as platforms for disseminating information. By joining these events, a large audience was reached. To enlarge the attention of the wider public and the media, the Swiss league worked with prominent ambassadors. They had a special interest in the themes of the campaign and could facilitate media activities. This helped to remove the taboos surrounding rheumatic diseases. Together with the Swiss league they formulated concise statements to be used in all media activities. The ambassadors explained, for instance, the conditions under which a person should visit a doctor in order to get an appropriate assessment of the symptoms. To provide more in-depth information to those affected by rheumatic diseases, the league organized health conferences throughout Switzerland with presentations by specialists. All these activities were supported by a web dossier, web videos, publications, members' magazines, print and online media. Success of the campaign was seen in the increased number of people downloading web content, a higher number of requests for brochures and an increasing level of media presence. More information about this campaign can be found through the EULAR Congress book 2015.

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Appendix

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Figure 1. Recommended procedure for translating, adapting and disseminating EULAR recommendations to patients

Nat

iona

l Pat

ient

org

anis

atio

n

Disseminating the national lay version to patients using a variety of strategies

Adapting the lay version to the national context if nesessary

Translating the English lay version into own national language

Making a dissemination or communication plan and start fund raising

Making the English lay version and national translations available on EULAR website - EULAR secretariat

Making an English lay version A medical writer; Review by research partners; approval by TF-leader

Making a dissemination plan EULAR Recommendation Task Force (TF)

EULA

R

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Checklist 1. Making a dissemination plan

This table shows different actions that can be taken for dissemination of recommendations to patients.

What is needed for dissemination?

Examples of ways to do this (actions) Strategy

Making the EULAR recommendations available

Check for the availability of an English lay version.

Translating the English lay version in your own language (see the French case study on page 14 and the Belgium case study on page 16)

Developing a country specific lay version (adaptation)

.....

OR

GA

NISATIO

N

Making the EULAR recommendation accessible for patients

Publishing the national lay version on the website of national organisations

Providing a link on your website to the original and the English lay version of the EULAR website

Patient leaflets and patient magazines Reference cards and background information

(see case study on page 8) .....

Making individual patients aware of the existence of lay versions of the EULAR recommendations

Including EULAR recommendations in existing patient information materials

Patient leaflets Article in patient journals Incorporating the lay versions in self-

management courses, programs or work books

Message on television screens in waiting rooms

Posters in waiting rooms of rheumatologists/ orthopaedic surgeons

Social media such as LinkedIn and Facebook Groups

Organising a survey among members (see case study on page 18)

Tweets ……

INFO

RM

ATION

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Making patient organisation and individual patients interested in the EULAR recommendations

Involving patient representatives in the Recommendation Task Force (see page 9)

Personal communication Organising a meeting Recruiting key persons/Opinion leaders

(ambassadors: see Swiss case study on page 19)

Invitational conference Workshop at PARE conference or national

events ….

MO

TIVATION

Making individual patients capable to understand the recommendations.

Developing an English lay version if this is not available (see the ASAS case study on page 14)

Involving a professional, medical writer (see case study page 17)

Developing E-learning module or program Education, guidance and support by other

patients …..

EDU

CATIO

N

Evaluating the effectiveness of the dissemination

Determine indicators for availability, accessibility, awareness, and understanding

Conducting evaluation studies …..

EVALU

ATIO

N

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Checklist 2. Outline basic information of a lay summary *

Disease, condition • What is the disease? • What are the symptoms? • How is the diagnosis made? By whom?

Explanation about the disease and about how the body normally functions. A reference to the self test (if available)

• How many people have this disease? • How does the disease develop?

Self-management, what can I do?

• What can I do to reduce the symptoms? • What can I do to prevent the symptoms or worsening of the disease?

A reference to tools that support self-management (if available), for instance a disease diary or medication app.

Treatment • What is the treatment? • What treatments are possible (treatment options) • What is the expected result? • What are potential risks and complications? • Who is taking care of the treatment (general practitioner, specialist, health

professional) A reference to a decision aid about different treatments (if available)

• What kind of research is needed to evaluate the effectiveness of the treatment? • What is the procedure if the symptoms do not disappear? • Which medical tests are needed? By whom (specialist, specialized nurse, general

practitioner)? How often? • In case of which symptoms should a patient (immediately) contact a doctor?

(signal information) Limitation and disability

• What do the symptoms and any limitation mean for daily living? • What are the consequences for living, work, income, social participation,

relationships, sexuality, leisure time (social life)? • Where can I find support for coping with the impact of the disease? • A reference to websites of patient organisations and other national (independent)

organisations that provide education or support.

* Source: “Patient information based on recommendations”, Dutch Federation of Patients and Consumers, 2012.

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Checklist 3. Translating and adapting English lay versions into a national lay version

Translate the text of the English lay version into the national language The translation should preferably be done by a professional translator. Stay close to the text of the English lay version Use the advice mentioned under recommendation 4 to make the text readable Ensure the accuracy of the translation by using the principle of forward and backward

translation* Let patients check whether the translated version is readable and understandable (use

the technique of cognitive interviewing*) Add a paragraph with an explanation about the country specific context of the

recommendations at the end of the translated version (For example, if the recommendation advises the use of nurse practitioners, but in the your country this kind of nurse does not exist, it should be explained who can do the job instead)

Complement the national lay version with - a paragraph about the applicability of the recommendations - a paragraph about the feasibility of the recommendations - a paragraph that highlights the differences from previous recommendations - a reference to the source of the original recommendation as well as the

English lay version (EULAR website) The EULAR scientific society of your country should approve the final lay version Send the translated and approved lay version to the EULAR secretariat to be added to

the EULAR website

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Checklist 4. Steps of forward and backward translation* Translation of the lay version into European languages requires a process of forward-backward translation in 5 steps.

Step 1 Two or three persons (at least 1 rheumatologist and 1 teacher of English, all as bilingual as possible, but of whom at least one must be fully bilingual, and wherever possible also a patient research partner) – translate independently the English version into the target language.

Step 2 A single preliminary lay version is obtained during a simple consensus meeting with the 2 to 3 translators. Please keep in mind at this phase that the final wording needs to be understood by lay people, including people with low health literacy.

Step 3 Backward translation is then performed by an independent bilingual native English speaker, blinded to the English original version.

Step 4 A multidisciplinary consensus committee then meets, including the initial 2-3 translators, at least 2 rheumatologists (who may also be part of the translator group), one person very familiar with cross-cultural adaptation, and at least one patient fluent in English. The group will compare the initial version and the back-translation and will discuss the phrasing of the target-language version, and by consensus will produce a final version. The committee has to ensure that the translation is fully comprehensive and to verify cross-cultural equivalence of the source and final versions. Please keep in mind again at this phase that the final wording needs to be understood by lay people including people with low health literacy.

Step 5 The final version is pre-tested with 5 target-language-native patients. These patients read the lay version in the presence of one of the members of the translation team to check whether it is fully understood for all recommendations and whether the patients have problems with the formulation. Patients’ comments are collected and the initial translators may need to go back to the translation and modify it, if comments are frequent and consistent.

Courtesy of Prof. dr. L. Gossec

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Checklist 5. Examples of translations into lay language This table provides examples of translations of 7 original recommendations into lay language. They derive from the “EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update.” This table shows that adaptations are sometimes minimal (1). In other cases actors are introduced (2: doctors and patients), recommendations are simplified (3), sentences are shortened by splitting into two sentences (4), shortened by explaining terms in an additional introduction (5) or sentences are explained by adding information (6) or by describing difficult terms (7).

ORIGINAL LAY SUMMARY

1. Therapy with DMARDs should be started as soon as the diagnosis of RA is made.

1. Patients should start taking DMARDs as soon as they are diagnosed with RA.

2. Monitoring should be frequent in active disease (every 1–3 months); if there is no improvement by at most 3 months after the start of treatment or the target has not been reached by 6 months, therapy should be adjusted.

2. Doctors should monitor patients every one to three months when their RA is active. If a patient has not improved enough after three or did not reach an agreed therapeutic target at six months, their treatment should be adjusted.

3. In cases of MTX contraindications (or early intolerance), sulfasalazine or leflunomide should be considered as part of the (first) treatment strategy.

4. If a patient can’t take methotrexate, sulfasalazine and leflunomide are other preferred options.

4. Low-dose glucocorticoids should be considered as part of the initial treatment strategy (in combination with one or more csDMARDs) for up to 6 months, but should be tapered as rapidly as clinically feasible.

5. Patients and doctors can consider using corticosteroids called glucocorticoids at low doses, as part of the patient’s initial treatment (along with DMARDs). But these drugs should be reduced and stopped as soon as possible.

6. In patients responding insufficiently to MTX and/or other csDMARD strategies, with or without glucocorticoids, bDMARDs (TNF inhibitors, abatacept or tocilizumab, and, under certain circumstances, rituximab) should be commenced with MTX.

5. Biological DMARDs are usually used along with methotrexate.

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6. Tofacitinib may be considered after biological treatment has failed

6. If biological DMARDs haven’t helped, a DMARD called tofacitinib can be considered in countries that have approved this drug (currently not approved in the EU region due to questions on the benefit-risk ratio).

7. When therapy needs to be adjusted, factors apart from disease activity, such as progression of structural damage, comorbidities and safety issues, should be taken into account

7. When treatment needs to be adjusted, other things need to be taken into account along with a patient’s disease activity. These things include any other illnesses the patient may have, the possible side effects of current or previous treatment, and the development of joint damage over time.

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Checklist 6. The use of social media and innovative tools

Combining different strategies for dissemination strengthens the effectiveness of your efforts. However, information on which strategies are most successful is lacking. The following strategies can be used, depending on the available resources: Publications on paper

• Journal publications. • Paper newsletters of patient organisations. • Books • Advertisements in magazines and newspapers • Advertisements on relevant products (e.g. milk cartons) or medication boxes

Education

• Interactive internet-based lectures • Developing a variety of learning tools like posters, summaries, hand-outs, pocket

cards, slide sets etc for patients and professionals • Interactive group education materials

Internet/ICT:

• E-guidelines • Other ICT channels (eg, MSN Messenger, AOL Instant Messenger) • Use of virtual guides to direct people to the website (eg, in chat boxes) • Forums on the Internet • Automatic new information and resources for professionals and patients who have

signed up for updates • Links on other websites • Publications on Facebook, LinkedIn etc • Publications on websites of patient organisations • E-mail • Banners on other websites • Online counselling of patient organisations • Advertising • Advertisements on websites visited by the target group

Oral presentations and interviews: • At meetings • At conferences • On television and radio

Other media:

• DVDs • Making a video, for inspiration or for instruction.

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Network • Face-to-face contact • Word of mouth (e.g. by friends and family)

Phone

• Telephone calls • SMS • Whatsapp

Persons

• ‘Knowledge brokers’, people whose role it is purely to disseminate knowledge. They would need an understanding of both the research and the target audience

• Ambassadors (prominent people) • Recruit national contact persons • Activation of a network of local key opinion leaders as messengers and educators • Recruitment of clinical champions/community champions.

Flyers/leaflets/posters

• Distribution of flyers at exhibitions and other public events • Distribution of flyers door-to-door • Posters • Personalised leaflets for patients

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Literature

(1) Dougados M, Betteridge N, Burmester GR, et al. EULAR standardised operating procedures for the elaboration, evaluation, dissemination, and implementation of recommendations endorsed by the EULAR standing committees. Annals of the rheumatic diseases 2004;63(9):1172-6.

(2) van der Heijde D, Aletaha D, Carmona L, et al. Update of the EULAR standardised operating procedures for EULAR-endorsed recommendations. Ann Rheum Dis 2015;74(1):8-13.

(3) Hoes JN, et al. EULAR evidence-based recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases. Ann Rheum Dis 2007;66(12):1560-7.

(4) de Wit MP, Berlo SE, Aanerud GJ, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the rheumatic diseases 2011;70(5):722-6.

(5) Kiltz et al. ASAS/EULAR recommendations for the management of ankylosing spondylitis: the patient version. Ann Rheum Dis, 2009; 68(9): 1381-6.

(6) van der Goes MC, et al. Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases. Ann Rheum Dis 2010;69(6):1015-21.

(7) van Eijk-Hustings Y, et al. EULAR recommendations for the role of the nurse in management of chronic inflammatory arthritis. Ann Rheum Dis 2012;71(1):13-9.

(8) van Eijk-Hustings Y, et al. Dissemination evaluation of the European League Against Rheumatism recommendations for the role of the nurse in the management of chronic inflammatory arthritis: results of a multinational survey among nurses, rheumatologists and patients. Rheumatology 2014;53(8):1491-6.

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Acknowledgements

We would like to thank the following persons for their active participation in the

development of this guide for patient organisations.

Professionals

Leti van Bodegom-Vos, Netherlands

Maya Buch, United Kingdom

Rinie Geenen, Netherlands

Laure Gossec, France

Alison Kent, United Kingdom

Kati Otsa, Estonia

Thea Vliet-Vlieland, Netherlands

Patient representatives

Nele Caeyers, Belgium

Adriana Carluccio, Italy

Rolf Greiff, Sweden

Birte Glüsing, EULAR secretariat

Ingrid Poldemaa, Estonia

Dieter Wiek, Germany

Working Group

Minne Bakker, VU Medical Center Amsterdam

Karen Schipper, VU Medical Center Amsterdam

Tineke Abma, VU Medical Center Amsterdam

Maarten de Wit, Convener of the EULAR Task Force

Proofreading of the guide

Diana Skingle, PARE board, United Kingdom

This project has been carried out under the responsibility of the EULAR Standing Committee of PARE.

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